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Cleft Lip Stigma Cost Infant His Life

The social stigma against cleft lip and palate has made Li Xingzong who he is today. Even after three surgeries in childhood, his speech can be difficult to understand. The 71-year-old man is silent most of the time, and he avoids going anywhere without his wife to help him communicate, even if it’s just to the local wet market. Though he was fortunate to be born into a wealthy family in Shanghai, who gave him the best medical treatment available at the time and showered him with extra love and care because of his disability, he has still endured a lifetime of discrimination and social isolation.

Though nearly 30,000 children are born each year in China with oral clefts — either cleft palate, cleft lip, or both — Li is well aware that fear and ignorance continue to surround the condition. But he was shocked to hear that a newborn infant was killed in suburban Shanghai last July for having a cleft lip. The baby was murdered with a lethal injection by his own grandfather. “It’s definitely a difficult way ahead for a family with such a child,” Li told Sixth Tone. “But killing a newborn simply because of this problem is extremely inhumane.”

A man stands in the hallway of the maternity ward at Second People’s Hospital in Chongming District, Shanghai, July 22, 2015. Five days prior, an infant born with a cleft lip was killed here by his grandfather. Yong Kai/Sixth Tone

A month ago, the Chongming District People’s Court sentenced the grandfather, surnamed Peng, to seven years in jail and the obstetrician who provided the lethal injection, surnamed Zhou, to five years. It wasn’t the first time a family member in China had been convicted for killing a baby born with a cleft lip or palate. But in past cases, the killers were sentenced to less than three years in prison, and even then the sentences were suspended in some cases. The Chongming case caught many by surprise because it took place within the municipality of Shanghai, in educated and affluent eastern China, rather than in a remote village, where people might expect to hear of infants with birth defects or disabilities being abandoned or killed by poor parents.

Theoretically lives are all equal, but in practice that’s not the case.

- Zhang Peihong, criminal lawyer

In China, there is no separate charge of infanticide, but experts say that although murdering a newborn is categorized as homicide, sentences are often more lenient. “Theoretically lives are all equal, but in practice that’s not the case,” Zhang Peihong told Sixth Tone. The Shanghai-based lawyer, who specializes in criminal law, said he’s never seen the death penalty, or even a life sentence, given for killing a baby. He said a judge would consider the family’s motivation, their financial circumstances, and the health of the infant. “But essentially, an infant who has no awareness of life is treated differently from a child or an adult who has experienced life,” he said. However, Zhang said, family members who kill a healthy baby girl because of her gender typically get more severe sentences, compared with cases that involve congenital anomalies — usually more than 10 years’ imprisonment.

The convicted grandfather hails from Zhanhong Village in Chongming County, which sits at one end of the bridge connecting Chongming island to the rest of Shanghai. The village population is listed at 3,800, but a third of the residents, including the grandfather, work downtown, many as taxi drivers.

The villagers are well aware of the murder and have followed the legal case closely. One villager surnamed Gu told Sixth Tone that local people believe infants will be born with oral clefts because their parents or close family members have been uncharitable. “People here say that we can’t close our doors to a beggar, or our children will suffer from this problem as retribution for a lack of kindness,” said Gu.

Oral clefts are common in China — the second most prevalent congenital anomaly in the country, after heart disease. Although Zhanhong Village is small, Gu said he’s known three neighbors who have had cleft lip or palate. “They led normal lives like everyone else here, except they couldn’t communicate fluently,” he said. Inadequate medical services in the past meant that the village’s older residents with oral clefts were mostly left untreated, resulting in serious speech impediments, though the condition is not life-threatening.

The village’s party secretary, Ding Jinde, said he never imagined that someone in his village would kill a baby for such a reason. He admitted that decades ago, infanticide was quite prevalent in the village, regardless of the baby’s health, either because parents felt they couldn’t financially support the child, or because of a preference for boys over girls. “There were no contraceptive measures in the old days, and people in the village were extremely poor,” he said.

But things have changed drastically over the last 20 years. Ding said that the villagers’ understanding of the law has improved — with government campaigns sending legal education pamphlets to all households over the last couple of years — along with their economic status. According to Ding, residents in Zhanhong Village make an average monthly income of 5,000 yuan ($750) — low, but enough to make ends meet. He was stunned by the murder, assuming such things only happened in poorer regions. “The grandfather must have lost his head for a moment,” Ding speculated.

Locals here believe that you must have committed something immoral or indecent if you have a child with cleft lip or palate.

- Xue Aiqing, Zhanhong Village resident

But another villager, Xue Aiqing, who lived near the grandfather, said she believed village gossip motivated the grandfather. “Locals here believe that you must have committed something immoral or indecent if you have a child with cleft lip or palate. We gossip about it when we play poker or mahjong together,” she told Sixth Tone. “I assume Old Peng was afraid of losing face.”

Xue said that although the villagers also gossip about other congenital anomalies, oral clefts in particular are prone to stigma because of communication difficulties. “We gossip about babies or children with lazy eye too,” she said. “But this is not as noticeable, so we get used to it and soon stop discussing it.”

For years, foundations like Smile Train and Smile Angel have offered free treatment for children with oral clefts whose families can’t afford surgery. Surgery and speech pathology have also advanced since Li’s childhood, so fewer people with oral clefts will have ongoing difficulty speaking. But many families aren’t aware of these organizations.

According to a doctor at the Chongming hospital where Peng and Zhou committed the murder, surgery for a minor cleft lip would cost under 4,000 yuan, while a more complex instance of cleft lip and palate that required multiple surgeries could add up to more than 50,000 yuan. Under condition of anonymity, the doctor told Sixth Tone that though oral cleft wasn’t a severe health issue, the hospital would allow parents to terminate a pregnancy of up to 24 weeks if the condition is detected during a check-up — if no conditions are detected, termination is only permitted in public hospitals during the first 12 weeks of pregnancy. “We respect families’ choices and wouldn’t insist that they keep the baby,” the doctor said.

In June last year, a local court in Leqing, a city in coastal Zhejiang province, sentenced a family of four to between 18 and 24 months on probation for abandoning their baby boy, who had cleft lip and palate. The four were the child’s parents and grandparents, and they left the newborn in a remote wilderness. Miraculously, the infant was rescued two days later by a passerby who heard his cries. The family claimed they were too poor to afford the treatment their infant needed, with their combined monthly income of around 8,000 yuan.

An infant was found alive in a white foam box after having been abandoned in a remote wilderness in Leqing County, Zhejiang province, March 2015. From the official website of the Wenzhou police

Short or suspended sentences have sent the message that infanticide is not serious. Homicide in China can be penalized by sentences of more than 10 years, life imprisonment, or even the death penalty, but the law allows sentences of three to 10 years “if the circumstances are relatively minor.” Lawyer Zhang said judges tend to be sympathetic to poor families who feel they don’t have the means to raise their children. “In my experience, a three-year sentence is common for families who kill their own infants,” he said. “What’s worse is that in some cases, people can escape the charge of homicide altogether and be charged with infant abandonment instead, which carries a much lighter sentence.”

In a 2010 case in rural Daming County, Hebei province, a father and grandfather abandoned a baby girl with cleft lip and palate in a ditch outside the village, saying they couldn’t afford the surgery she required, which would have cost close to 10,000 yuan. The baby girl died, but the two adults were sentenced to just two years on probation, under the charge of child abandonment. Zhang feels that when infants are abandoned in remote areas, the charge should be murder.

Zhang believes that the Chongming case, which was covered widely in Chinese media and watched closely by people across the country, serves as a stronger deterrent but personally believes that a sentence of seven to 10 years would be more appropriate.

The verdict was met with divided opinions in Zhanhong Village. Party secretary Ding said the penalty was too severe because the grandfather was the only person providing a stable wage for the family. “The sentence has taken away their main source of income for seven years, and that’s devastating to the family,” he said. In his view, three years would have been enough.

Ding said he could understand the grandfather’s motivation because the crime had taken place before the two-child policy was announced. “Who doesn’t want their only child to be perfect?” he asked. The one-child policy even acknowledged this attitude, allowing parents to apply to family planning officials to have a second child if their first had a severe disability.

But villager Gu said that seven years was not a long enough sentence for the grandfather’s crime. “He didn’t even discuss the matter with his son and daughter-in-law,” Gu said. “If the decision to euthanize the baby had been made by his parents, I think it would have been more understandable.” Gu repeatedly used the Chinese word for euthanasia, though the infant was not terminally ill, and euthanasia is illegal in China.

A small vegetable garden in front of a house in Zhanhong Village in Chongming County, Shanghai, July 14, 2016. Ni Dandan/Sixth Tone

Zhu, director of the research office at Chongming District People’s Court, told Sixth Tone that the sentence was appropriate and sent a strong message. “No one should assume that they can avoid legal penalties by using the excuse of poverty,” he said.

In the eyes of Li Xingzong, more serious sentences might make people reconsider their actions, but the real challenge lies in eradicating the deep-rooted stigma against people like him. As a university graduate with a diploma in electrical engineering, Li never had trouble finding work, but his former co-workers were often rude and impatient with him because of his speech impediment. Consequently, he has little confidence and few friends. Yet despite the hardships he has faced, Li is grateful for the life he has, for his wife and son, and for the quiet days he spends reading books online.

Li hopes to see more acceptance for people with cleft lips and palates, as this would both make life easier for those born with the anomaly and alleviate the stress on their families. “What we lack today is no longer advanced medical treatment, but support and care from others,” he said.